This is the end, for now, of Bobby's blog. I haven't updated it since before Christmas, largely because it started to feel like a chore, but I thought it needed one final post as a sign off.
Really, this feels like the end of our first chapter with Bobby. The chapter with two open heart surgeries and 13 hospitalizations. The chapter where we agonized over his every milestone.
The last few months have been so different. Learning has become much easier for Bubs. It used to be that every step was initiated by the mamas and required endless repetition before he mastered the new skill. Now, he's figuring some things out on his own and understands what we're teaching him much more quickly.
Oh, its not without trials. He started eating purees and then just stopped. Now we're restarting the feeding process with grown up food and it's a slow journey. While Bobby's been blessed with good health for the last few months, we still have the most difficult of his heart surgeries looming ahead about a year from now. He's got some habits that make his mamas a little crazy - staring at lights for much longer than he should, hitting his head, and some other sensory issues. But as crazy as they make us, his therapists assure us that they are normal for a child that's had low sensory input like Bobby has - meaning very little tummy time and no crawling.
Mostly though, its good news. He's scooting everywhere now, a process that also has increased his upper body strength exponentially. He's growing well - he's even got a little extra chub on his tummy, hopefully waiting to kick off a growth spurt. He loves daycare, loves his teachers, and enjoys interacting with the other children. He's about to graduate to an older room where he'll get more stimulation. He's trying to pull himself up - one of those skills we didn't introduce to him - its his own desire to be mobile that motivates him. He's not got a lot of language yet, but he is fully capable of expressing himself. And he definitely understands a fair amount of what we say to him. He's started to stand up for himself around other children and sometimes he willfully misbhaves.
He's full of laughter and wonder. Given what we've been through in the first chapter, its amazing to spend this time with him now. As we move on, I want to say thank you to all of the readers of This Bobby's Life. Your support has been invaluable!
3/21/10
12/18/09
Holiday Bubs
Wow, its been a while since my last post. I hardly know where to start on the Bubs catch up.
We celebrated Thanksgiving in classic Grunsted style by hanging out at the hospital. Bobby had a tonsilectomy/adenoidectomy and tear duct probe. The original hospitalization was supposed to be overnight but we were there three days waiting for Bobby's oxygen saturation levels to stabilize. Spending a holiday in the hospital is a definite downer (although the mood was lightened by our good friends the Medinas who brought us Thanksgiving dinner) but its good to have the surgery behind us. Hopefully he'll be healthier for the rest of the winter.
Since the surgery, we've been working to increase Bobby's food intake. His weight has stalled a bit. We've tried increasing the calorie count of the food he's on, but its given him bad diarrhea (or frequent blow outs, as we're fond of saying) and kept him up at night. So, we're back to his old formula formulation, planning to increase the volume he eats.
Lastly on the medical front, we've had two ER visits this week. Bobby's Mic-Key button came out Saturday night. Valerie went to comfort a crying Bubs at 3 am and found his sheets soaked. Unfortunately, the tube had been out so long that his g-tube hold had started to close so we couldn't replace it ourselves. Valerie volunteered for hospital duty and five hours later Bobby was home with a smaller button.
Then yesterday I got a call from daycare after his afternoon nap that he had turned blue around his eyes and sweated out his clothes. I'm not sure that he was really blue as in lack of oxygen blue - that has always started at his lips and tongue. But, his teachers are great and I trust them when they say something is wrong, so we went back to the ER. Four hours later we were going home after negative chest x-rays and a good EKG.
Therapy has been slowed some this month by the medical goings ons. Still things are going well. His Developmental Therapist told me that Bobby was beginning to narrow his percent delay, meaning that not only is he progressing, but he is learning at a faster rate than he has in the past.
The Bubs is getting strong! His body feels so much tighter when I toss him into the air - I credit that to all that time he's spent sitting up. He's able to pivot - he uses his legs to turn himself 360 degrees. He is also starting to butt scoot a bit. In the last couple of weeks, he's learned to pull himself into sitting position. He starts on his tummy and then does the splits. He pushes his upper body upright by 'walking' his arms towards his body. Its quite impressive.
Of course, we've gotten some negative feedback from our therapists about this adaptation. I understand that it's not ideal for him to be relying on this position - he needs to stop doing the splits so much and start stabilizing his hips. That said, he is 20 months old. At 20 months, the boy deserves some mobility by whatever means he can achieve it. Goodness knows we've tried hard enough to do things the 'right' way.
Bubsy is getting to be more fun by the day. He is starting to develop a sense of humor and is very conscious of whether or not we are watching him when he makes his silly sounds and gestures. He gives 'five' and enjoys being clapped for. My son the entertainer.
We're having a great Christmas season. Little Lord Bubsleroy is going to get more toys than he needs. I have to start packing up some of his current stuff now. We've seen Santa Claus and shown some curiousity but haven't pulled any hair or beard as I guessed he might. We have a couple more chances this weekend as we're going to a Christmas party for one of our play groups tomorrow and then having Breakfast with Santa at Lambs Farm on Sunday.
We celebrated Thanksgiving in classic Grunsted style by hanging out at the hospital. Bobby had a tonsilectomy/adenoidectomy and tear duct probe. The original hospitalization was supposed to be overnight but we were there three days waiting for Bobby's oxygen saturation levels to stabilize. Spending a holiday in the hospital is a definite downer (although the mood was lightened by our good friends the Medinas who brought us Thanksgiving dinner) but its good to have the surgery behind us. Hopefully he'll be healthier for the rest of the winter.
Since the surgery, we've been working to increase Bobby's food intake. His weight has stalled a bit. We've tried increasing the calorie count of the food he's on, but its given him bad diarrhea (or frequent blow outs, as we're fond of saying) and kept him up at night. So, we're back to his old formula formulation, planning to increase the volume he eats.
Lastly on the medical front, we've had two ER visits this week. Bobby's Mic-Key button came out Saturday night. Valerie went to comfort a crying Bubs at 3 am and found his sheets soaked. Unfortunately, the tube had been out so long that his g-tube hold had started to close so we couldn't replace it ourselves. Valerie volunteered for hospital duty and five hours later Bobby was home with a smaller button.
Then yesterday I got a call from daycare after his afternoon nap that he had turned blue around his eyes and sweated out his clothes. I'm not sure that he was really blue as in lack of oxygen blue - that has always started at his lips and tongue. But, his teachers are great and I trust them when they say something is wrong, so we went back to the ER. Four hours later we were going home after negative chest x-rays and a good EKG.
Therapy has been slowed some this month by the medical goings ons. Still things are going well. His Developmental Therapist told me that Bobby was beginning to narrow his percent delay, meaning that not only is he progressing, but he is learning at a faster rate than he has in the past.
The Bubs is getting strong! His body feels so much tighter when I toss him into the air - I credit that to all that time he's spent sitting up. He's able to pivot - he uses his legs to turn himself 360 degrees. He is also starting to butt scoot a bit. In the last couple of weeks, he's learned to pull himself into sitting position. He starts on his tummy and then does the splits. He pushes his upper body upright by 'walking' his arms towards his body. Its quite impressive.
Of course, we've gotten some negative feedback from our therapists about this adaptation. I understand that it's not ideal for him to be relying on this position - he needs to stop doing the splits so much and start stabilizing his hips. That said, he is 20 months old. At 20 months, the boy deserves some mobility by whatever means he can achieve it. Goodness knows we've tried hard enough to do things the 'right' way.
Bubsy is getting to be more fun by the day. He is starting to develop a sense of humor and is very conscious of whether or not we are watching him when he makes his silly sounds and gestures. He gives 'five' and enjoys being clapped for. My son the entertainer.
We're having a great Christmas season. Little Lord Bubsleroy is going to get more toys than he needs. I have to start packing up some of his current stuff now. We've seen Santa Claus and shown some curiousity but haven't pulled any hair or beard as I guessed he might. We have a couple more chances this weekend as we're going to a Christmas party for one of our play groups tomorrow and then having Breakfast with Santa at Lambs Farm on Sunday.
11/24/09
Rough Going
It was a tough day for Bubsy. He had a temperature around 99.7 when we got to the hospital, but it seemed to fall after we took a few layers off so we went ahead. The surgeries all went fine - no issues with the tonsils/adenoids and the eye doctor said that the tear ducts opened nicely.
Recovery, however, has been another story. This afternoon Bobby spiked a fever of 102. Dr Billings the ENT thinks it may be because she cleaned up an ear infection during the procedure. We iced him down and he seemed to do better.
My bigger concern is that Bobby couldn't maintain his oxygen saturations (they fell into the 70s) so he's got a cannula. He's not on a lot of oxygen (1.5 liters) but he does have some junk in his lungs. Hopefully its just a bit of mucuous that he can cough out, but of course, my mind immediately goes to the multiple lung collapses he's had post extubation. Hopefully he'll be spared that.
So far the pain has been OK with tylenol. He'll come home with a prescription for Tylenol with Codeine just in case, but Valerie will try to get him through tonight without it because it can lower saturations.
Mama V is on hospital duty tonight. I've already come home to try to get rested for what lies ahead. I'm trying not to jinx us but I'm having visions of Thanksgiving on 5 west. We'll know more in the morning.
Recovery, however, has been another story. This afternoon Bobby spiked a fever of 102. Dr Billings the ENT thinks it may be because she cleaned up an ear infection during the procedure. We iced him down and he seemed to do better.
My bigger concern is that Bobby couldn't maintain his oxygen saturations (they fell into the 70s) so he's got a cannula. He's not on a lot of oxygen (1.5 liters) but he does have some junk in his lungs. Hopefully its just a bit of mucuous that he can cough out, but of course, my mind immediately goes to the multiple lung collapses he's had post extubation. Hopefully he'll be spared that.
So far the pain has been OK with tylenol. He'll come home with a prescription for Tylenol with Codeine just in case, but Valerie will try to get him through tonight without it because it can lower saturations.
Mama V is on hospital duty tonight. I've already come home to try to get rested for what lies ahead. I'm trying not to jinx us but I'm having visions of Thanksgiving on 5 west. We'll know more in the morning.
The (Latest) Big Day
In less than an hour, Bobby was placed under general anesthesia, and had his tonsils and adenoids removed. Dr Billings, Bobby's ENT, just came out to give us the update - Bobby came through with flying colors. However, he did have a nasty left ear infection, which she drained, and now has a new ear tube in place to help with drainage. He'll be sent home with antibiotics (always a good idea for the Bubs) and Tylenol with Codeine. If all goes well, he'll be home some time tomorrow morning.
Right now, we're waiting on the opthamology procedure with Dr Hawke Yoon. I remember when we first met Dr Yoon - he skipped into the examination room. Also, it's nearly impossible to refer to him only as Dr Yoon - he is such a fun guy with such a great name - he will always be Doctor Hawke Yoon to me.
Right now, we're waiting on the opthamology procedure with Dr Hawke Yoon. I remember when we first met Dr Yoon - he skipped into the examination room. Also, it's nearly impossible to refer to him only as Dr Yoon - he is such a fun guy with such a great name - he will always be Doctor Hawke Yoon to me.
11/23/09
One Tough Truck!
Tomorrow is Bobby's TAD surgery (tonsils, adenoids, and eye ducts). Poor little guy is covered with scars from his journey thus far. I get sad thinking about what he's been through and yet am so thankful for the years that the surgeons have given him and us. So far they've rerouted his venous system and wrapped his stomach around his esophagus. How resilient is the human body? How amazing can modern medicine be?
10/30/09
10/4/09
9/28/09
The List
I read an article today about Rosanne Cash's latest album - The List. When she was 18 her dad gave her a list of the 100 greatest country and western songs of all time. She just recorded an album with 13 of those songs.
I love the story of how the album came to be. To me, music is one of the greatest gifts we can give our children. Of course, few of us can aspire to the legacy of Johnny Cash, and in my case, I'm not even in tune enough to teach Bobby how to sing on key. But I can share my love of music.
My joy in music stems from childhood, so its only fair to pass on the tradition. I remember riding around in my dad's car listening to the local country station. We listened to Merle Haggard, Loretta Lynn, George Jones, all the greats. No wonder then that Bobby spent many of his early days - days when he was weak from congestive heart failure - listening to the classic country station on TV. He didn't care much for the other stations, but the old time country soothed him to sleep.
My mom listened to classical music, something I never understood. What was the point of music without words? But she gave me a different kind of musical gift. One year during Christmas mass she noticed that I wasn't singing and asked me why. "I can't sing," I told her.
"God gave you that voice and He deserves to hear it," she answered.
That was a revelation. God gave me the voice and I should use it? Not worry if my voice is flat? Excellent! I started singing. I sang off key. I sang the wrong words to songs. But I sang. All the time.
When my parents died, music was my solace. I spent the summer after my dad died playing "Fire and Rain" and "Far Side Banks of Jordan" over and over and over again. When my mom died I played "Angel" by Sarah McLachlan. Over and over and over again.
So, its no surprise that, upon learning that Bobby had a heart condition and most likely had Down Syndrome, I turned to music. Not knowing what else to do for my boy I sang this song into Valerie's tummy every night:
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since
You're the apple of your mama's eye
You're the golden son, my sweetie pie
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since.
I spent days making Bobby a mixed tape to welcome him into the world, and, not coincidentally, introduced him to the music his mamas love. These songs expressed the things I wanted Bobby to know before he came into the world - that he was perfect just as he was; that he was coming to mamas who had fierce love for him. I wanted him to know that he was welcome in this world; that while it wouldn't be easy to have Down Syndrome, in the end, God and his mamas would watch over him. And I wanted him see the beauty of his own little spirit - the light that was coming to change our world. We played it in the car in the months leading up to his birth and we play it to this day.
River Deep, Mountain High - Tina Turner
Sweet Home Chicago - Robert Johnson
Don't You Worry 'Bout a Thing - Stevie Wonder
You Were Made For Me - Sam Cooke
Everyday People - Sly and the Family Stone
Loves me Like a Rock - Allison Krauss & the Cox Family
Shine - Dolly Parton
Keep Me God - Iris Dement
Something's Gotta Hold on Me - Etta James
Wonderful World, Beautiful People - Jimmy Cliff
Whole Lotta Shakin' Goin' On - Big Maybelle
To Zion - Lauryn Hill
Bridging the Gap - Nas
Respect Yourself - Staple Singers
Sweet Thing - Van Morrison
Everybody Wants to Be a Cat
I spent the first scary year of Bobby's life singing. During the first few weeks, when he was gassy and couldn't get relief, I wrote this song for him, singing and swaying until he fell asleep:
Bobby Bear
Bobby Bear
It's no fun with gas in there
Go ahead and make a fart
You can't finish until you start
I sang to him through many a medical procedure, trying to take his mind off the indignity of the echocardiogram wand or the probing stethoscope. I sang familiar tunes with new words, words to replace lyrics I didn't like, or words that simply were more appropriate for the occasion:
Rock a bye baby, in the tree top
When the wind blows, the cradle will rock
When the bow breaks, nothing happens at all
Because mama and mama will not let you fall
I sang because I didn't know what else to do. I just wanted him to know that mama was there, even when he was stuck full of needles and tubes, even when I couldn't hold him. And the beautiful, magical thing of it is, it worked. He and I have one very special song, a song I have sung to him thousands of times. It always soothes him.
You are my sunshine
My s-o-n shine
You make me happy
oh, every day
I hope you know dear
that I adore you
and in my heart
I hope you know you'll stay
The other night, dear
as I lay sleeping
I dreamt I held you
in my arms
when I awoke, dear
my dream came true, dear
I'll hold you tight
try to protect you from all harm
Now, as he gets bigger and stronger, Bobby shows us that his love for music rivals my own. He plays the drums; he shakes the maracas; he shakes his shakers; he rings bells. He and I take a music class once a week. Each night when I pick him up from daycare we listen to the class CD. Driving home I sing and he yells and giggles, singing along too. Neither one of us in tune and neither one of us cares. It's so rock and roll I can hardly stand it.
I love the story of how the album came to be. To me, music is one of the greatest gifts we can give our children. Of course, few of us can aspire to the legacy of Johnny Cash, and in my case, I'm not even in tune enough to teach Bobby how to sing on key. But I can share my love of music.
My joy in music stems from childhood, so its only fair to pass on the tradition. I remember riding around in my dad's car listening to the local country station. We listened to Merle Haggard, Loretta Lynn, George Jones, all the greats. No wonder then that Bobby spent many of his early days - days when he was weak from congestive heart failure - listening to the classic country station on TV. He didn't care much for the other stations, but the old time country soothed him to sleep.
My mom listened to classical music, something I never understood. What was the point of music without words? But she gave me a different kind of musical gift. One year during Christmas mass she noticed that I wasn't singing and asked me why. "I can't sing," I told her.
"God gave you that voice and He deserves to hear it," she answered.
That was a revelation. God gave me the voice and I should use it? Not worry if my voice is flat? Excellent! I started singing. I sang off key. I sang the wrong words to songs. But I sang. All the time.
When my parents died, music was my solace. I spent the summer after my dad died playing "Fire and Rain" and "Far Side Banks of Jordan" over and over and over again. When my mom died I played "Angel" by Sarah McLachlan. Over and over and over again.
So, its no surprise that, upon learning that Bobby had a heart condition and most likely had Down Syndrome, I turned to music. Not knowing what else to do for my boy I sang this song into Valerie's tummy every night:
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since
You're the apple of your mama's eye
You're the golden son, my sweetie pie
Twinkle Twinkle Little Prince
I loved you when God made you and I'll love you ever since.
I spent days making Bobby a mixed tape to welcome him into the world, and, not coincidentally, introduced him to the music his mamas love. These songs expressed the things I wanted Bobby to know before he came into the world - that he was perfect just as he was; that he was coming to mamas who had fierce love for him. I wanted him to know that he was welcome in this world; that while it wouldn't be easy to have Down Syndrome, in the end, God and his mamas would watch over him. And I wanted him see the beauty of his own little spirit - the light that was coming to change our world. We played it in the car in the months leading up to his birth and we play it to this day.
River Deep, Mountain High - Tina Turner
Sweet Home Chicago - Robert Johnson
Don't You Worry 'Bout a Thing - Stevie Wonder
You Were Made For Me - Sam Cooke
Everyday People - Sly and the Family Stone
Loves me Like a Rock - Allison Krauss & the Cox Family
Shine - Dolly Parton
Keep Me God - Iris Dement
Something's Gotta Hold on Me - Etta James
Wonderful World, Beautiful People - Jimmy Cliff
Whole Lotta Shakin' Goin' On - Big Maybelle
To Zion - Lauryn Hill
Bridging the Gap - Nas
Respect Yourself - Staple Singers
Sweet Thing - Van Morrison
Everybody Wants to Be a Cat
I spent the first scary year of Bobby's life singing. During the first few weeks, when he was gassy and couldn't get relief, I wrote this song for him, singing and swaying until he fell asleep:
Bobby Bear
Bobby Bear
It's no fun with gas in there
Go ahead and make a fart
You can't finish until you start
I sang to him through many a medical procedure, trying to take his mind off the indignity of the echocardiogram wand or the probing stethoscope. I sang familiar tunes with new words, words to replace lyrics I didn't like, or words that simply were more appropriate for the occasion:
Rock a bye baby, in the tree top
When the wind blows, the cradle will rock
When the bow breaks, nothing happens at all
Because mama and mama will not let you fall
I sang because I didn't know what else to do. I just wanted him to know that mama was there, even when he was stuck full of needles and tubes, even when I couldn't hold him. And the beautiful, magical thing of it is, it worked. He and I have one very special song, a song I have sung to him thousands of times. It always soothes him.
You are my sunshine
My s-o-n shine
You make me happy
oh, every day
I hope you know dear
that I adore you
and in my heart
I hope you know you'll stay
The other night, dear
as I lay sleeping
I dreamt I held you
in my arms
when I awoke, dear
my dream came true, dear
I'll hold you tight
try to protect you from all harm
Now, as he gets bigger and stronger, Bobby shows us that his love for music rivals my own. He plays the drums; he shakes the maracas; he shakes his shakers; he rings bells. He and I take a music class once a week. Each night when I pick him up from daycare we listen to the class CD. Driving home I sing and he yells and giggles, singing along too. Neither one of us in tune and neither one of us cares. It's so rock and roll I can hardly stand it.
9/15/09
Daycare, Boogers, and Farts
Bobby has been in daycare for six days now and things are going well - much better than I even hoped.
The staff has been very willing to learn how to do his feeds. The g-tube itself is pretty straightforward, the hard part with Bobby is dealing with the wretching. When he has air in his tummy or sour stomach, he can't burp or vomit much. So the g-tube has to be opened and allowed to empty itself of the offending air or gastric juice. And this all has to be done while he's screaming and thrashing.
But, the teachers have taken it on and taken it in stride. Plus, they really like Bubs. He is a little sugar bear. When he likes you, he throws his arms out to the side as far as he can and then exuberantly throws them around your neck. If you're lucky, you might get a little smoochie (open mouth) on the chin. And when he cuddles, well the boy knows how to lean in and give some love. It's unbeatable.
The other children are a bit overwhelming for him at times, but for the most part he is content, watching them crawl and play (although there was one little incident of hair pulling) This, of course, is just what we want - Bubs seeing the possibility of mobility. Today he started sitting with the children at the lunch table, not to eat, but to see how much fun eating is.
So far he's sitting up most of his time on the floor. We need to give him more tummy time to work on the crawling, but I'm really impressed that he can sit up as long as he can. Its only been since August that he could sit at all and now he can sit up for an hour.
All this time sitting has had a wonderful, unexpected side effect - the wretching is getting better. First of all, with his new abs of steel, developed from long bouts of sitting, he can control his inner workings better and coughs that used to lead to wretching are now just coughs. No horrible pain, no meltdowns. Just coughs.
Second, as a bonus to his new physique, he has learned that when he has air in his tummy, he can draw his knees to his chest, bare down, and rip a manly little fart. He has never been able to fart pain free - the straining always led to wretching and screaming and then venting through a tube. Pooping? That was a horrible process where he'd strain and wretch, we'd let the air out of his tummy and then he'd lose the pressue he needed to pass the poo, so we'd have to start the process all over again. Now, things are getting better every day. Plus, and maybe this something only a mama can love, but he is so cute when he draws up his little legs and pumps out the little boy poots.
So, I give daycare credit for the improved tummy issues. I also credit our new and improved feeding schedule where he gets more time off between feeds. We need to pay a little extra attention to his weight gain, but for now, I'll assume that the fact that I had to box up a pile of outgrown clothing is a good sign that we're on the right track.
But, daycare is not without its down notes. Within seconds of entering the daycare room, Bobby's nose snotted up and has stayed that way since. I'm not sure if its allergies or a cold - Mama V is allergic to nearly everything so I'm guessing it might be the former. Except Mamas V and A have both had colds, so maybe its the latter. Valerie explained to me that I could tell the difference by the translucency of his boogers, but I didn't absorb the information.
Why didn't I absorb it? Because the boogers drive me to distraction. Trying to wipe snot off his nose makes him angry and leaving the snot there grosses me out worse than changing a big blow out. And when he comes in for a kiss - its all I can do to raspberry his neck with full gusto. Sometimes I think I'll just leave it alone, but then I can't stand it when it disappears from his face - did he eat it? Is it on me? On his bed? I expected a lot of things about this parenting gig - but I never thought about the amount of snot I'd have to wrangle. But, I guess if Bobby can develop a baby six pack and teach himself to fart, I can stomach the snot. Its all about facing life's little challenges.
The staff has been very willing to learn how to do his feeds. The g-tube itself is pretty straightforward, the hard part with Bobby is dealing with the wretching. When he has air in his tummy or sour stomach, he can't burp or vomit much. So the g-tube has to be opened and allowed to empty itself of the offending air or gastric juice. And this all has to be done while he's screaming and thrashing.
But, the teachers have taken it on and taken it in stride. Plus, they really like Bubs. He is a little sugar bear. When he likes you, he throws his arms out to the side as far as he can and then exuberantly throws them around your neck. If you're lucky, you might get a little smoochie (open mouth) on the chin. And when he cuddles, well the boy knows how to lean in and give some love. It's unbeatable.
The other children are a bit overwhelming for him at times, but for the most part he is content, watching them crawl and play (although there was one little incident of hair pulling) This, of course, is just what we want - Bubs seeing the possibility of mobility. Today he started sitting with the children at the lunch table, not to eat, but to see how much fun eating is.
So far he's sitting up most of his time on the floor. We need to give him more tummy time to work on the crawling, but I'm really impressed that he can sit up as long as he can. Its only been since August that he could sit at all and now he can sit up for an hour.
All this time sitting has had a wonderful, unexpected side effect - the wretching is getting better. First of all, with his new abs of steel, developed from long bouts of sitting, he can control his inner workings better and coughs that used to lead to wretching are now just coughs. No horrible pain, no meltdowns. Just coughs.
Second, as a bonus to his new physique, he has learned that when he has air in his tummy, he can draw his knees to his chest, bare down, and rip a manly little fart. He has never been able to fart pain free - the straining always led to wretching and screaming and then venting through a tube. Pooping? That was a horrible process where he'd strain and wretch, we'd let the air out of his tummy and then he'd lose the pressue he needed to pass the poo, so we'd have to start the process all over again. Now, things are getting better every day. Plus, and maybe this something only a mama can love, but he is so cute when he draws up his little legs and pumps out the little boy poots.
So, I give daycare credit for the improved tummy issues. I also credit our new and improved feeding schedule where he gets more time off between feeds. We need to pay a little extra attention to his weight gain, but for now, I'll assume that the fact that I had to box up a pile of outgrown clothing is a good sign that we're on the right track.
But, daycare is not without its down notes. Within seconds of entering the daycare room, Bobby's nose snotted up and has stayed that way since. I'm not sure if its allergies or a cold - Mama V is allergic to nearly everything so I'm guessing it might be the former. Except Mamas V and A have both had colds, so maybe its the latter. Valerie explained to me that I could tell the difference by the translucency of his boogers, but I didn't absorb the information.
Why didn't I absorb it? Because the boogers drive me to distraction. Trying to wipe snot off his nose makes him angry and leaving the snot there grosses me out worse than changing a big blow out. And when he comes in for a kiss - its all I can do to raspberry his neck with full gusto. Sometimes I think I'll just leave it alone, but then I can't stand it when it disappears from his face - did he eat it? Is it on me? On his bed? I expected a lot of things about this parenting gig - but I never thought about the amount of snot I'd have to wrangle. But, I guess if Bobby can develop a baby six pack and teach himself to fart, I can stomach the snot. Its all about facing life's little challenges.
9/6/09
The Bobby Grunsted Music Explosion
You can teach a boy how to hit a baseball, or how to play the clarinet. But rock gods are not made...rock and roll comes from the heart, baby.
9/4/09
Rum Tum Tumblers
First of all, Bobby continus to feel much, much better since his hospitalization. He is wretching less than he has in the last couple of weeks.
His GI system is so hard to predict. About 7 weeks ago we went to Bobby's GI doctor who was concerned about his lack of weight gain. He'd only gained 100 grams in the past month or so, according to the doctor's scales and growth chart we needed to up his calories. I say according to the doctor's scales and charts because Bobby continued to have fat on his arms and thighs, continued to have a pleasingly plump belly, and was still growing longer. Personally, I think the scales were off, but Bobby had been on the same calorie content for several months and so we figured that it might be time to increase that.
We moved him from formula that is made at 24 calorie/ounce to formula that is 27 calorie/ounce. Bobby is on Elecare, a special broken down formula that reduces issues with his milk intolerance but is otherwise really hard to digest. He did fine with the calorie increase for a week but then started to have increased wretching. He wasn't throwing up - until recently, his nissen fundoplication surgery prevented him from throwing up but he would gag and gasp like he had the dry heaves and his stomach quaked and shook in a way we describe as having a rum tum tumbler. When that happens, we attach a syringe to his feeding tube to allow the contents to drain. This was happening several times a day. Its horribly painful for him and it does result in calorie loss because half the time the contents of the syringe spill on us or him before we can get it back into his tummy.
So, we called Dr. Sentongo, our GI doc, and asked if we could try moving Bobby to soy formula. In the past, he has been able to digest 30 calorie/ounce soy formula. We'd had to stop using it when his milk intolerance worsened and the soy made him sick. Often this intolerance wanes by a baby's first birthday so we thought it was reasonable to give it another shot.
Bobby then had some food allergy tests and everything came back normal. Dr. Sentongo said we were safe to try Bobby on soy because it was very unlikely that it would make him sick. He might still have an intolerance that would take several days to be realized.
Well, we tried Bobby twice on soy. Once it was a low amount of straight soy. The second time it was 1 part soy formula mixed with 4 parts Elecare. Both times he got violently ill within an hour. He heaved so hard that he did throw up.
So, we stopped the soy. We'll try milk-based formula again after he's two. In the meantime, Valerie and I decided that we weren't going to force the 27 calorie Elecare on Bobby. Instead we went back to Dr. Sentongo who recommended that we start upping his volume. At the time, Bobby had an 11 hour feed at night where he got almost 2 ounces an hour. In the day time he had 3 bolus feeds where he got just under 3 ounces in an hour. Yes, that's eating 14 hours a day. In the daytime, he would get 2 hour breaks between meals. I was increasingly unhappy with this schedule, especially since we had also had a well child visit with our pediatrician where Bobby's placement on the growth chart was perfect - 50th percentile in weight and length for a child with Ds, which is where we've tried to keep him since birth.
But we followed the doctor's advice and tried upping the volume of his feeds and that worked for a few days but the wretching started once again. At some point in this period two other things started happening - one, food started coming up, something we thought the nissen would prevent and two, we think Bobby got a stomach virus.
Last weekend his wretching became nearly constant and he spit up large volumes several times (I've never quite decided where the boundary between spit up and vomiting is). We tried substituting formula feeds with Pedialyte to keep him hydrated but I think his body needed extra fluids because of the virus and we just couldn't keep up.
Monday we went to our long ago scheduled GI visit. We told Dr. Sentongo that we thought Bobby needed bowel rest and an IV and asked him to consider admitting Bobby, but the doctor was convinced that the wretching was reflux related and did not require intervention. This even though Bobby vomited all over me in the waiting room so we had evidence of how bad things had gotten. Valerie and I put our foot down about the feeding schedule - he is not going to eat 3 bolus during the day. The doctor sort of agreed, telling us to give him 2.5 bolus during the day. Valerie and I had a quick exchange of looks that confirmed between us that we weren't going to argue with the doctor and we weren't going to follow his advice either. In Monday's visit, the doctor's growth charts and scales showed what has been the case all along - Bobby is growing fine. He was growing fine in the wake of having numerous formula feeds replaced with Pedialyte. He was growing fine even though he was regularly rejecting his feeds.
Needless to say we're frustrated with Dr. Sentongo, especially given that Bobby ended up being hospitalized for dehydration a few hours and two feeds later. We're frustrated that Bobby had the nissen and yet is back on the road to throwing up, even though the surgeons say the operation went as it should.
We've decided to quit relying on the doctors for Bobby's feeding schedule. Certainly their advice matters, but I think they are so focused on getting a certain number of calories in Bubs that they don't think further than that. When we were waiting for Bobby's heart surgery his doctor told us that the minimum caloric intake for a baby with a bad heart was 125 cal/kg. We never got Bobby above 100 cal/kg (8-9 ounces less per day than what the doctor recommended) yet his weight and growth were fine. We believe that if we cut his feeds to 2 times a day plus the overnight feed there's a good chance he will have less come out through spit ups and venting and he'll feel better so we won't have to keep substituting Pedialyte for formula to keep his tummy under control. Our goal is to find the caloric intake that Bobby can comfortably manage and then see how the weight gain goes.
At Monday's appointment we also asked for another endoscopy to make sure everything is OK in Bobby's system. The doctor doesn't think it's necessary - largely because his growth is good. Yet last year, Bobby spent 2 months throwing up because of a bacterial infection called H.Pylori. It was detected in an endoscopy that was only done because he was losing weight. At some point, it seems to me that if Bobby is in so much discomfort from eating three ounces of formula in an hour, we should be able to have a doctor go take another look. Or at least do a biopsy to make sure he doesn't still have H.Pylori or some other bacterial issue that is oh so easy to pick up in the hospital.
So we keep slogging away. We have gotten so much wrong advice in Bobby's GI life that we don't know what to believe right now. I'm thankful that he is growing well and we aren't in a situation where this is becoming life or death. I suppose part of this is patience, waiting for Bobby to get stronger so he can digest more easily. Part of it is putting renewed emphasis on eating purees becaus he may never do great on an all formula diet. But mostly, I think we need to quit listening to all the outside noise and let Bobby's rum tum tum dictate the feeding schedule.
His GI system is so hard to predict. About 7 weeks ago we went to Bobby's GI doctor who was concerned about his lack of weight gain. He'd only gained 100 grams in the past month or so, according to the doctor's scales and growth chart we needed to up his calories. I say according to the doctor's scales and charts because Bobby continued to have fat on his arms and thighs, continued to have a pleasingly plump belly, and was still growing longer. Personally, I think the scales were off, but Bobby had been on the same calorie content for several months and so we figured that it might be time to increase that.
We moved him from formula that is made at 24 calorie/ounce to formula that is 27 calorie/ounce. Bobby is on Elecare, a special broken down formula that reduces issues with his milk intolerance but is otherwise really hard to digest. He did fine with the calorie increase for a week but then started to have increased wretching. He wasn't throwing up - until recently, his nissen fundoplication surgery prevented him from throwing up but he would gag and gasp like he had the dry heaves and his stomach quaked and shook in a way we describe as having a rum tum tumbler. When that happens, we attach a syringe to his feeding tube to allow the contents to drain. This was happening several times a day. Its horribly painful for him and it does result in calorie loss because half the time the contents of the syringe spill on us or him before we can get it back into his tummy.
So, we called Dr. Sentongo, our GI doc, and asked if we could try moving Bobby to soy formula. In the past, he has been able to digest 30 calorie/ounce soy formula. We'd had to stop using it when his milk intolerance worsened and the soy made him sick. Often this intolerance wanes by a baby's first birthday so we thought it was reasonable to give it another shot.
Bobby then had some food allergy tests and everything came back normal. Dr. Sentongo said we were safe to try Bobby on soy because it was very unlikely that it would make him sick. He might still have an intolerance that would take several days to be realized.
Well, we tried Bobby twice on soy. Once it was a low amount of straight soy. The second time it was 1 part soy formula mixed with 4 parts Elecare. Both times he got violently ill within an hour. He heaved so hard that he did throw up.
So, we stopped the soy. We'll try milk-based formula again after he's two. In the meantime, Valerie and I decided that we weren't going to force the 27 calorie Elecare on Bobby. Instead we went back to Dr. Sentongo who recommended that we start upping his volume. At the time, Bobby had an 11 hour feed at night where he got almost 2 ounces an hour. In the day time he had 3 bolus feeds where he got just under 3 ounces in an hour. Yes, that's eating 14 hours a day. In the daytime, he would get 2 hour breaks between meals. I was increasingly unhappy with this schedule, especially since we had also had a well child visit with our pediatrician where Bobby's placement on the growth chart was perfect - 50th percentile in weight and length for a child with Ds, which is where we've tried to keep him since birth.
But we followed the doctor's advice and tried upping the volume of his feeds and that worked for a few days but the wretching started once again. At some point in this period two other things started happening - one, food started coming up, something we thought the nissen would prevent and two, we think Bobby got a stomach virus.
Last weekend his wretching became nearly constant and he spit up large volumes several times (I've never quite decided where the boundary between spit up and vomiting is). We tried substituting formula feeds with Pedialyte to keep him hydrated but I think his body needed extra fluids because of the virus and we just couldn't keep up.
Monday we went to our long ago scheduled GI visit. We told Dr. Sentongo that we thought Bobby needed bowel rest and an IV and asked him to consider admitting Bobby, but the doctor was convinced that the wretching was reflux related and did not require intervention. This even though Bobby vomited all over me in the waiting room so we had evidence of how bad things had gotten. Valerie and I put our foot down about the feeding schedule - he is not going to eat 3 bolus during the day. The doctor sort of agreed, telling us to give him 2.5 bolus during the day. Valerie and I had a quick exchange of looks that confirmed between us that we weren't going to argue with the doctor and we weren't going to follow his advice either. In Monday's visit, the doctor's growth charts and scales showed what has been the case all along - Bobby is growing fine. He was growing fine in the wake of having numerous formula feeds replaced with Pedialyte. He was growing fine even though he was regularly rejecting his feeds.
Needless to say we're frustrated with Dr. Sentongo, especially given that Bobby ended up being hospitalized for dehydration a few hours and two feeds later. We're frustrated that Bobby had the nissen and yet is back on the road to throwing up, even though the surgeons say the operation went as it should.
We've decided to quit relying on the doctors for Bobby's feeding schedule. Certainly their advice matters, but I think they are so focused on getting a certain number of calories in Bubs that they don't think further than that. When we were waiting for Bobby's heart surgery his doctor told us that the minimum caloric intake for a baby with a bad heart was 125 cal/kg. We never got Bobby above 100 cal/kg (8-9 ounces less per day than what the doctor recommended) yet his weight and growth were fine. We believe that if we cut his feeds to 2 times a day plus the overnight feed there's a good chance he will have less come out through spit ups and venting and he'll feel better so we won't have to keep substituting Pedialyte for formula to keep his tummy under control. Our goal is to find the caloric intake that Bobby can comfortably manage and then see how the weight gain goes.
At Monday's appointment we also asked for another endoscopy to make sure everything is OK in Bobby's system. The doctor doesn't think it's necessary - largely because his growth is good. Yet last year, Bobby spent 2 months throwing up because of a bacterial infection called H.Pylori. It was detected in an endoscopy that was only done because he was losing weight. At some point, it seems to me that if Bobby is in so much discomfort from eating three ounces of formula in an hour, we should be able to have a doctor go take another look. Or at least do a biopsy to make sure he doesn't still have H.Pylori or some other bacterial issue that is oh so easy to pick up in the hospital.
So we keep slogging away. We have gotten so much wrong advice in Bobby's GI life that we don't know what to believe right now. I'm thankful that he is growing well and we aren't in a situation where this is becoming life or death. I suppose part of this is patience, waiting for Bobby to get stronger so he can digest more easily. Part of it is putting renewed emphasis on eating purees becaus he may never do great on an all formula diet. But mostly, I think we need to quit listening to all the outside noise and let Bobby's rum tum tum dictate the feeding schedule.
9/2/09
Estrella and Shafik
We had a little detour in Bubsy's road to health. Late last week he caught some sort of stomach bug. Post nissen surgery his stomach is not normal baby sized, so we were unable to keep him sufficiently hydrated. His blood sugar got too low, his dehydration took a toll on his heart and he started having some labored breathing. So, we ended up back in the hospital for 2 days.
Most importantly, Bobby is fine now. Maybe a little too fine as tonight, his first night home, he figured out how to pull on his g-tube cord so that the iv pole its attached to rolls across the floor. It's a good trick, a pretty smart trick I must say, but one we can definitely do without.
The hospital was interesting as always. Because he had had some vomiting and diarrhea he was put in isolation. At Children's isolation also means no roommate, which is a huge boon. It's rough to share a room at the hospital - first of all the rooms are tiny so mama ends up sleeping on a fold out chair jammed against Bobby's bed. A day or two of that kind of closeness is way too much. More important than that, who wants their sick baby in such close quarters with another sick baby? Bobby has gotten more viruses from the hospital than ailments our 11 hospital visits have cured. Lastly, a children's hospital is full of angry parents - parents who want their child discharged; parents who don't want to share a room; parents who don't believe the doctors are doing enough for their child; parents who are tired of dealing with residents and want to talk to a 'real' doctor. When I'm the angry parent, I don't really want a roommate listening in on my discussions about Bobby's care. When our roommate has an angry parent I balk at having to spend my day swimming in the negative energy. So, while I'm not happy Bubs had diarrhea, I will say that if he has to be hospitalized, I'd just as soon it be for something that lands him in isolation.
This hospitalization also marked Bobby's first ride in an ambulance. His labored breathing on Monday night was something new - I was used to his old huffing and puffing from congestive heart failure, but this was something scarier. He was breathing in loudly and forcing air out by puckering his mouth and blowing through his lips. At first I thought it was just a new oral activity for him, like raspberrying or fish face kisses. But as time wore on I became more and more worried. So I called an ambulance.
The paramedics showed up in about 3 minutes. Living next to a fire station is often a nuisance, with the loud sirens at all times of night. But living next to a fire station on Monday night was a blessing. They hooked up Bobby to a pulsometer to check his oxygen levels. Those were fine, but still I wanted him to go to the emergency room.
We ended up at Weiss Memorial hospital a few minutes from our house. It was our first visit to somewhere besides Children's. The care was good, although its much different to be in a hospital that's used to serving adults. The nurses didn't wear smocks with Sesame Street characters on them. They had to search for the right sized blood pressure cuffs. The only diaper they had was for a 30 pound baby. And, they had to search for someone to draw blood from Bobby.
Bobby is, as they say in the phlebotomy business, a 'tough stick'. I've watched a heart surgeon struggle to draw blood from him. Bobby's required an ultrasound for someone to find a vein in him. The angriest scar on his body is from an IV placement in his wrist that was so botched he required stitches.
At Children's, we only allow one phlebotomist to take Bobby's blood. Shafik has worked at Children's for 20 years and is unquestionably the best at what he does. He has arrived on the heels of the vascular access team, specialists in 'tough sticks' who often fail to get blood from Bubs. Shafik draws the blood in his first try. He's so skilled that Bobby doesn't always have time to cry. Shafik patiently searches for a vein, all the while comforting Bobby with his thick Arabic accent 'it's OK baby. Sorry baby. I'm almost done baby. It's OK baby. It's OK baby'. Without him, I'm afraid Bobby would look like a pin cushion now, so full of holes from failed sticks. To us, a good phlebotomist is as valuable as any member of the hospital staff. He has saved Bobby an unbelievable amount of suffering.
So at Weiss we were very concerned about Bobby's blood draw. If staff trained to work with children couldn't successfully get blood from Bobby, what could we expect of these folks? Sure enough, the first nurse came in, looked at his feet and his arms and then shook her head, telling our primary nurse to 'find Estrella'. Estrella was on triage duty that night and we waited a full hour and a half for her to have time to see us. Bobby's breathing had returned to normal and we considered signing ourselves out and taking Bobby to Children's, so convinced were we that the blood draw attempt would fail.
Finally, Estrella came into the room. She was an older woman, with gray streaks in her dark hair. She had glasses that sat low on her nose, as if she were more a librarian than a nurse. She studied Bobby's arms and feet for a long time, finally settling on his left foot. We held Bobby still as the needle went under his skin. I held my breath watching for blood to flow out. And it did.
"Thank God," Estrella said softly, repeating her praise just as Shafik repeats "It's OK baby. It's OK baby." For Estrella, Bobby actually fell asleep in the middle of the blood draw.
I thanked Estrella, telling her that she was only the second person to successfully draw blood from Bobby on the first try. "I prayed for it," she said.
She was so sincere. I was very touched. Obviously Estrella is very skilled at what she does. Her coworkers defer to her and she equaled the accomplishment of the very best phlebotomist we know. But for all her skill she doesn't forget the power of prayer. And in doing so she saved my little boy a lot of unhappiness and pain.
Most importantly, Bobby is fine now. Maybe a little too fine as tonight, his first night home, he figured out how to pull on his g-tube cord so that the iv pole its attached to rolls across the floor. It's a good trick, a pretty smart trick I must say, but one we can definitely do without.
The hospital was interesting as always. Because he had had some vomiting and diarrhea he was put in isolation. At Children's isolation also means no roommate, which is a huge boon. It's rough to share a room at the hospital - first of all the rooms are tiny so mama ends up sleeping on a fold out chair jammed against Bobby's bed. A day or two of that kind of closeness is way too much. More important than that, who wants their sick baby in such close quarters with another sick baby? Bobby has gotten more viruses from the hospital than ailments our 11 hospital visits have cured. Lastly, a children's hospital is full of angry parents - parents who want their child discharged; parents who don't want to share a room; parents who don't believe the doctors are doing enough for their child; parents who are tired of dealing with residents and want to talk to a 'real' doctor. When I'm the angry parent, I don't really want a roommate listening in on my discussions about Bobby's care. When our roommate has an angry parent I balk at having to spend my day swimming in the negative energy. So, while I'm not happy Bubs had diarrhea, I will say that if he has to be hospitalized, I'd just as soon it be for something that lands him in isolation.
This hospitalization also marked Bobby's first ride in an ambulance. His labored breathing on Monday night was something new - I was used to his old huffing and puffing from congestive heart failure, but this was something scarier. He was breathing in loudly and forcing air out by puckering his mouth and blowing through his lips. At first I thought it was just a new oral activity for him, like raspberrying or fish face kisses. But as time wore on I became more and more worried. So I called an ambulance.
The paramedics showed up in about 3 minutes. Living next to a fire station is often a nuisance, with the loud sirens at all times of night. But living next to a fire station on Monday night was a blessing. They hooked up Bobby to a pulsometer to check his oxygen levels. Those were fine, but still I wanted him to go to the emergency room.
We ended up at Weiss Memorial hospital a few minutes from our house. It was our first visit to somewhere besides Children's. The care was good, although its much different to be in a hospital that's used to serving adults. The nurses didn't wear smocks with Sesame Street characters on them. They had to search for the right sized blood pressure cuffs. The only diaper they had was for a 30 pound baby. And, they had to search for someone to draw blood from Bobby.
Bobby is, as they say in the phlebotomy business, a 'tough stick'. I've watched a heart surgeon struggle to draw blood from him. Bobby's required an ultrasound for someone to find a vein in him. The angriest scar on his body is from an IV placement in his wrist that was so botched he required stitches.
At Children's, we only allow one phlebotomist to take Bobby's blood. Shafik has worked at Children's for 20 years and is unquestionably the best at what he does. He has arrived on the heels of the vascular access team, specialists in 'tough sticks' who often fail to get blood from Bubs. Shafik draws the blood in his first try. He's so skilled that Bobby doesn't always have time to cry. Shafik patiently searches for a vein, all the while comforting Bobby with his thick Arabic accent 'it's OK baby. Sorry baby. I'm almost done baby. It's OK baby. It's OK baby'. Without him, I'm afraid Bobby would look like a pin cushion now, so full of holes from failed sticks. To us, a good phlebotomist is as valuable as any member of the hospital staff. He has saved Bobby an unbelievable amount of suffering.
So at Weiss we were very concerned about Bobby's blood draw. If staff trained to work with children couldn't successfully get blood from Bobby, what could we expect of these folks? Sure enough, the first nurse came in, looked at his feet and his arms and then shook her head, telling our primary nurse to 'find Estrella'. Estrella was on triage duty that night and we waited a full hour and a half for her to have time to see us. Bobby's breathing had returned to normal and we considered signing ourselves out and taking Bobby to Children's, so convinced were we that the blood draw attempt would fail.
Finally, Estrella came into the room. She was an older woman, with gray streaks in her dark hair. She had glasses that sat low on her nose, as if she were more a librarian than a nurse. She studied Bobby's arms and feet for a long time, finally settling on his left foot. We held Bobby still as the needle went under his skin. I held my breath watching for blood to flow out. And it did.
"Thank God," Estrella said softly, repeating her praise just as Shafik repeats "It's OK baby. It's OK baby." For Estrella, Bobby actually fell asleep in the middle of the blood draw.
I thanked Estrella, telling her that she was only the second person to successfully draw blood from Bobby on the first try. "I prayed for it," she said.
She was so sincere. I was very touched. Obviously Estrella is very skilled at what she does. Her coworkers defer to her and she equaled the accomplishment of the very best phlebotomist we know. But for all her skill she doesn't forget the power of prayer. And in doing so she saved my little boy a lot of unhappiness and pain.
9/1/09
8/18/09
8/5/09
Assessment Time
Its been a long couple of weeks here in Grunsted land. We've been going through Bobby's 1 year assessments (delayed because of all of his surgeries). The results have been disheartening. His Physical Therapy assessment showed him at the same age equivalency as his 6 month assessment. He came out as 4-5 months. To some extent, we just flat our reject that score. He is much, much stronger than he was 6 months ago and his general health and fitness aren't even comparable to winter time. But he has yet to achieve any of the major milestones - he can't roll over tummy to back by himself, he can't sit, he can't crawl, he can't walk. Etc.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
On the speech/feeding side, he has done better in terms of oral motor skills. He can babble quite a few sounds now. He keeps his tongue in his mouth more of the time. But he can't eat. Not only can't he eat, but he is doing worse than he did 10 months ago when he started eating baby food. Then he could eat 5-6 bites of puree. Now we struggle to get one bite into him. He has choked several times recently when he tried to swallow - something he's never done before. We hope that things will get better once his g-tube feedings are better spaced and he has a chance to feel hungry (right now, he's eating 14 hours a day) but I'm starting to wonder if he will ever be able to eat on his own. We're a long, long way from giving up on that, but the reality is some people do end up spending their lives on a feeding tube.
He hasn't had his occupational therapy assessment yet (tomorrow) but his developmental assessment did have some encouraging signs. Bobby's cognitive development has been better now that he feels better. He knows his name now, imitates our actions, engages in interactive play, and is starting to really study the world around him to try to figure out how things work.
So we tell ourselves it could be much worse. And it could. Now that he's doing so much better medically its easy to forget how sick he was a year ago. And its easy to start taking that for granted. But, now that we're not immersed in heart problems and GI surgeries we're really starting to feel the impact of the developmental disability side of Down Syndrome. And its horrible to want so much for your baby to be able to roll over and yet not be able to teach him how to after months of trying. And how do you teach your baby to swallow without choking?
When I hold Bobby in my arms and he reaches up to give me a hug and kiss I don't focus on these details - I just see the beautiful person he is. But at the same time I'm struggling now to find - in the pressure not to dwell on the negative and the imperative to count our blessing - the time to grieve for what's been lost. I hear a lot (and heck, have repeated myself a thousand times) that all children have limitations, that Bobby will eventually reach all these milestones, but the reality is that Bobby's climb is much steeper than that of other children and that he may not learn how to do all the things that most of us take for granted. I hope for the best. We'll give him the help he needs to reach his full potential. But this is breaking my heart.
7/27/09
7/10/09
Feeding Frenzy
This week in Bubsy land has found us focusing on his feeding schedule. We went to the ER Monday night because his wretching had gotten so bad that it was impacting his breathing. X rays confirmed that his g-tube and nissen were still in place. They admitted us with promises of an upper GI on Tuesday morning. But, when Tuesday came around they did not do anything further to help him. Instead they offered to keep him and 'watch' his feed for 36 hours. Now, 'watch' on one of the main floors of the hospital is a tricky concept. The nurses have a full load of patients in different rooms and are required to check on Bubs once every four hours. The residents who we might page are of course quite busy and take a long time to come when paged. So, 'watch' means that Mamas A and V sit on their butts for 36 hours and watch Bubsy and listen to the cries of the child in the next bed and wait for Bobby to run a temperature because of the infection he always gets in the hospital. So if he did wretch the doctors would have to take our word for it. Which is exactly what we wished they would do based on us having 'watched' him wretch for the past several weeks. (I don't know what sound a tree makes in an empty forest, but apparently a wretch is not heard unless its viewed by at least a resident). It took me about 7 hours of arguing but Bobby was eventually discharged for us to 'watch' from our own house. They suggested we change his feed and sent a nutritionist to give us a recommendation. The nutritionist asked me what I thought would be a good approach and wrote that down on her sheet.
So we got nowhere except that Bubs did get an IV and a break from eating for about 12hours. And we've started him on a gentler schedule. So far it looks promising although it will take another week or so for us to get back to any kind of maintainable schedule. In the meantime, Bobby had a cold - predating the hospital, we think, so its been a quiet week with lots of snuggling.
He is learning to push himself on a four wheeled scooter. He has started saying 'kay kay kay kay'. And has been the case for several months now, he just feels a ton stronger. This weekend we are starting our "Merry Music Maker" class and are hopefully going to a folk festival where they have an instrument petting zoo. He continues to refuse to roll over and we are beginning to think the boy may walk before he regularly rolls over tummy to back. That must be mohawk thinking.
So we got nowhere except that Bubs did get an IV and a break from eating for about 12hours. And we've started him on a gentler schedule. So far it looks promising although it will take another week or so for us to get back to any kind of maintainable schedule. In the meantime, Bobby had a cold - predating the hospital, we think, so its been a quiet week with lots of snuggling.
He is learning to push himself on a four wheeled scooter. He has started saying 'kay kay kay kay'. And has been the case for several months now, he just feels a ton stronger. This weekend we are starting our "Merry Music Maker" class and are hopefully going to a folk festival where they have an instrument petting zoo. He continues to refuse to roll over and we are beginning to think the boy may walk before he regularly rolls over tummy to back. That must be mohawk thinking.
7/7/09
The GI Saga Continues...
Bobby was admitted to CMH again tonight... having issues with discomfort with his feeds and weird breathing (sleep apnea?). They've scheduled an upper GI for tomorrow. We think he's somehow undone his Nissen surgery, which is supposed to help with his acid reflux. Let's hope they uncover something to explain the distress he's been in for the past few days!
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